Keep it to yourself. That used to be our family motto. We never talked about my sister’s “condition,” especially not to anyone outside the family. We were private, and there was nothing anyone could to do help anyway.
In high school, I started to rebel against our silence. I was beginning to learn who I was (headstrong) and what I wanted to do (make a difference). Being on the newspaper staff during this time helped me develop a voice, and despite my parents’ hesitancy, I wrote about my relationship with my sister. For the first time, our story became public.
There is nothing heroic — or shameful — about our family. My sister has mild mental retardation, or more appropriately, she is a wonderful woman with intellectual and developmental disabilities (IDD). She is lively and clever, attends community college and job training, lives in a group home, and is a Special Olympics athlete. Nowadays, everyone around us knows of her achievements. They have seen her grow and blossom over the years.
My parents and I have grown and blossomed along with her. After meeting and talking with other families we found that this informal support network mattered, that other people understood our experiences. Their friendship gave us strength. So my parents began telling our story and sharing their strength too.
My parents now work tirelessly on FFASN (Friend and Families of Asians with Special Needs), a nonprofit they helped found to inform and empower parents and caregivers about what they can do for their loved ones. (Note: Despite the name, FFASN is for everyone, not just Asian families.) With other volunteers, my parents organize support meetings for parents, sports teams and musical activities for their children, and fun picnics and festivities for the community. They dedicate much of their resources to something they truly believe in.
One of their most impressive undertakings so far was hosting the first FFASN community workshop earlier this year. The workshop focused on educating parents and caregivers about available resources, such as waiver programs. As a FFASN volunteer, I flew home to help out with the workshop.
That day was moving in many ways. Watching my mild-mannered father open the workshop and encourage a room full of parents to be their child’s advocate was especially inspiring. But the best part was hearing all the positive feedback from participants about how helpful the workshop was. One woman graciously told me, “Really, thank you for doing this.” But that the credit really belonged to all the wonderful volunteers who make FFASN possible.
I never dreamed my parents would go from “keep it to yourself” to sharing their story and creating a nonprofit. After years of silence, they opened up in a big way. I wrote this column because I am incredibly inspired and amazed by their hard work and continued efforts to make not only my sister’s life better, but other families’ lives as well.
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FFASN will be hosting its second community workshop, “Long Term Planning for People with Special Needs,” on Saturday, Oct. 15, 2011 at the MHMRA Conference Center at 7033 SW Freeway, Houston, Texas 77074. Early registration encouraged, seating is limited to 100. There is a $10 registration fee for attendees and lunch is provided. To learn more about the workshop or FFASN, please visit www.ffasn.org or email FFASN.Houston [at] gmail [dot] com — or feel free to email Angie at JBUcolumn [at] gmail [dot] com as she will be attending the workshop.